Research studies/Projects
In connection with the collection of data for a project-specific research study, data will be temporarily stored in an approved IT solution (registry solution). Such a "registry" will be of limited duration and will be the source for answering specific research questions set out in a research protocol. A typical example of these types of studies/registries is health research studies.
The main rule of research is that there must be a consent from the included participants. After the project has analyzed and published the research results in line with the stated objectives of the protocol, the project is considered completed. Data will be anonymized or deleted at some point after the end of the project.
A project specific registry must be formalized. The registry will implicitly be part of the application for prior approval to REK, if the project is to be considered as medical or health research, but will also have to be anchored internally in your institution. Some research projects fall outside the provisions of the Health Research Act, such as studies in health economics or quality studies. These registries should also be formalized prior to project start. For projects based at Oslo University Hospital (OUS), such formalization is done by submitting an electronic notification form. At OUS, there are several approved registry solutions for collection and storage, see Choice of Registry Solution. If you work at another hospital, you need to find out what applies locally.